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Archive for the ‘caregiving’ Category

Young hand with older hand

The helping hand of service comes to young and old alike.

“Do I have to go?” whined my 14-year-old son, hanging up the phone.  “Go where?” I asked. “And who was on the phone?”  “It’s that old guy from church.  He reminded me that I’ve been assigned to be his junior companion,” he continued.  “We’re supposed to go visit some more old people to make sure they’re all right.”

Although his description was lacking in cheerful good manners and enthusiasm, I had to admit it was honest and somewhat accurate.  I smiled in spite of myself knowing what he was talking about and I also knew who had called.  In our church, the goal is to have every member visited by another lay member of the congregation, representing clergy, on a monthly basis to make sure that all is well in the home, and to leave the family, or member, with a Gospel message.  The old guy to whom Keith had referred, those many years ago, was about the same age as Ken, and each old guy had a junior companion called to do this “duty” at age 14.

“You don’t have to go,” I reminded him.  “You do have a choice, but you know you should go — and with a willing heart.  It really won’t take very long, and guess what?  When you’re finished you will feel good about yourself because you have extended service to those who may be in need.  Perhaps just your visit and concern will bring someone a bit of unexpected happiness.”

It wasn’t as if he hadn’t grown up doing good deeds and giving service.  He was a wonderfully thoughtful young man.  Helping his grandparents on their little farm out of Sebastopol was service, but it was also something he wanted to do.  Carrying in groceries for a neighbor was what he chose to do.  Being kind and doing favors for others was part of his nature. Being a junior companion was an assignment by clergy, and different from what had been familiar. He wasn’t really certain if it would fit into his comfort zone.  It was also a step up the ladder in extending service.  Nevertheless, he also understood he was free to accept or refuse the assignment.  When the doorbell rang, though, he greeted his senior companion with a smile and a hardy handshake.

An hour or so later he popped back into the room wearing a happy face, and informing me that he “Kinda liked the old guy.”  Then he added, “You’re right mom.  I do feel good and I’m glad I went.”

Whatever the ingredient that makes us feel good following service to others appears to be a mystery; must be some kind of magic that fills our soul and lifts our spirit.  Or, possibly, it isn’t a mystery at all, nor is it magic. Wasn’t Jesus the example for extending service as He healed the sick, paused to give counsel to the wayward, blessed the children, caused the blind to see – the crippled to walk, and cured the lepers?  Could it be that our hearts are somehow touched by His Spirit when giving Christ-like service?

Many are drawn to serving others through career choices: doctors, nurses, health care providers and caregiver professionals just to name a few, but that isn’t the service to which I am referring – although greatly needed and appreciated.  It’s the giving of service without compensation that is true charity: service such as provided by the valiant sisters of the order and Mother Teresa.  While we all can’t dedicate a lifetime to mankind, it’s that spirit of charity which needs to be embraced.  For many, however, this kind of understanding, learning and making it all a part of our lives is a process.

Granddaughter Kristina and her boyfriend Chris had dropped in Valentine’s evening to say hello and stayed for dinner with me and Ken. Then they were off, but not to a party.  Instead the two visited with a disabled couple she had worked for during the past year.  A few days later she told me it was the nicest Valentine’s Day ever.  I asked her what she did that made it so special.  “I spent it with some people I love,” she answered, smiling at me.  I gave her an extra hug saying that I loved her too — and brushed away a tear.

Was her grandfather fun? Was I fun?  How about the disabled couple?  I doubt any of the four of us were a barrel of laughs.  Yet, she felt good about the visits, and I said to me, “She is learning.”  It tells us in Proverbs, “Your own soul is nourished when you are kind.”

So it is as we journey through life we mature and appreciate that our time here needs balance and is made better by many experiences, both good and bad.  It is never made whole with only pleasure and fun.  Actually, it’s just the opposite beginning with some kind of sacrifice —  extending the hand of help and service that helps build our firm foundation – the most important part of us for a truly balanced life.

Admittedly, there are times when we feel we are out of balance.  When the weight of what seems to be never-ending adversity causes us to wonder and ask, “Why me?”  The old axiom, “You have to keep on doing it ‘till you get it right” might be funny when applied to justifying your bank statement, but caring for someone stricken with the likes of AD seems to make one crumble in frustration of doing the same thing day after day wondering if you’ll ever get it right.  Will there will ever be “a time for me “ – a time when this weight will be lifted?  Maybe “yes” maybe “no,” but it’s in that interim where we can concentrate on and accept “what is,” savoring the positive which can come from the negative: the positive being the building of our own strengths and character.  Have I arrived at this destination?  Goodness no, but I’m striving daily in that direction.

Ken and I are into the eighth year in our battle with Alzheimer’s, and I’ve come to accept it as the way of our life for as long as it lasts.  His mind is without memory or reason, but his physical health is very good.  Through these past years I have felt the highs and lows of just about every emotion I can name, gnashing my teeth, shedding tears (I still do), and pounding my fist into a pillow (not anymore) with little changing except Ken’s AD becoming worse. I am certain most caregivers have felt the same anger, frustration and defeat until they reach up to Him who can bless them with peace.

As acceptance became a focal point for me I have learned to be more relaxed, relying on another sage bit of advice, “Let go and let God.”  I strive to do that for I know I am not alone.  I know that my Lord is with me bringing comfort when I despair and guiding me along this rocky path.

I am constantly learning and looking for new ways to be more helpful to the man I married; the man to whom I promised my love through sickness and health, and to care for him in his time of need.

In my role as caregiver, delivering service to Ken who has been my loving companion for more than 5 decades I am reminded, and will quote once again one of my favorite scripture passages.  This one from Matthew when Jesus said, “For I was hungered, and ye gave me meat; I was thirsty, and ye gave me drink.  I was a stranger, and ye took me in, naked, and ye clothed me; I was sick, and ye visited me. I was in prison, and ye came unto me. 

 Then shall the righteous answered him, saying, Lord, when saw we thee and hungered, and fed thee? Or thirsty and gave thee drink?  When saw we thee a stranger and took thee in? Or naked, and clothed thee? Or when saw we thee sick, or in prison, and came unto thee?  And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”

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rollercoaster

The ups and downs of Alzheimer's can be worse than any roller coaster ride.

I dislike roller coasters. From the first time I visited Play Land At The Beach, which was   a very long time ago, I was wary of the ride – intrigued – but wary.  The ancient granddaddy of fun loomed over the rest of the concessions like the skeletal mid-section of a mythical dragon; a grayish monstrosity of what appeared to be old pieces of weathering wood which I believed to be untrustworthy even when I was young.

The amusement park was located right across from the Pacific Ocean at the end of the Great Highway and just a short walk south from San Francisco’s famous Cliff House.  Even as a pre-teen I could hear the rickety structure clickety-clack and rattle as each line of speeding cars roared up and down the  mountains of lumber and track finally screeching to a jolting halt at the end of the line. Frightening, yet I was fascinated.  “Oh come on you big baby,” badgered one of my older sisters.  “You’ll love it.”  Scary though it was, I wanted to love it like everyone else.

The three of us climbed into the seat, the attendant dropped the safety bar as my sisters warned, “Now hang on and never let go or you might fall out.”  Fear griped me and we were off. Climbing up was all right, but the descent was horrific. I hated every blood-chilling moment.  Furthermore, with each threat of death I repented of all my sins – however many sins a pre-teen could accumulate – I was penitent.

Time and time again, whenever I visited Play Land with my sisters and friends I was coaxed back onto the roller coaster with the promise from someone, “Oh, you’ll like it this time.  You just have to get used to it.”  Fear-stricken, I repented once again promising to be ever so good.   Still, I hated my skinny little body getting bruised, slammed and thrown around with each jerking turn.  Minutes later and facing the last invisible decline over what seemed to be the edge of the world, terror froze deep in my throat while other passengers screamed and shouted with glee.

As an adult and the mother of five grown children not much has changed regarding roller coasters except they’re bigger, better and faster as they race over the modern, steel-supported network of tracks.  Ken loves them, and always has.  He was probably one of those smart-alecky kids who laughed, yelled and held his hands straight up in the air on every downward dive.

At Great America, where we went for a family day, that roller coaster not only did the up-and-down thing, the tube-like car also spun in circles.  “You’ll like this one,” Ken had insisted.  “Come with me.  It’ll be fun.”  It wasn’t.  I repented again — and then found the ladies room where I lost my lunch.

Feeling sorry for me we had a 7-UP to settle my still-pitching stomach and found my kind of ride: those cute little boats that carry you through a maze of tracks onto an intermediate slope sending the passenger-filled boat into a boxed-in lake where, for thrills, you get a good splashing of water.

With roller coasters, Ferris wheels, merry-go-rounds, and even little boats now a part of our past, Alzheimer’s has brought us a new kind of roller coaster.  I don’t like this one either, and if Ken had his wits about him, he would be on my side.  Nevertheless, we’re both along for the ride whether we like it or not.  Unfortunately, there is no jolting stop where either one of us can get off – save it be death – or somehow a miraculous cure.  So we endure.

There are times when I see him fearful, as I was on that very first ride.  I know he is plunging into a down mood. “No!” he shouts.  “I’m not going.”  Going could be anywhere he’s doesn’t believe he wants to go, or it could be just his way of being independent.  Nevertheless, he means no — no to showers, to eating, to bed, for a ride, for a walk or to visit the doctor.  We might as well take him into the House of Horrors because he has that same expression of unknown fear in his eyes.

Later, when his mood changes to up, and he sees me not only as someone he recognizes, but as his wife, who he invites to sit beside him on the sofa.  I do and he puts his arm around my shoulders saying, “I love you.”  I sit closer and rest my head against his chest — snuggling in — and for a while it feels like old times – good.  His face is relaxed and he smiles when he looks at me.  For a while he is calm and quiet.  We just sit for as long as he’s willing — for as long as the up mood lasts.

His face begins to puzzle and I move away to prepare a simple dinner, hoping to have it finished before he becomes hostile.  Cleaning his plate with a crust of bread, his eyes begin shooting daggers at me.  “You don’t belong here,” he hisses, “get out of my house.”  I pretend to be accommodating and when he gets up to make certain I’m leaving, I close and lock the kitchen door behind him.  It’s good for Ken – and me – to take a break.

Quietly I watch him from around corners, and through a slit as I barely open the door.  He seems more peaceful sitting in a living room chair all by himself.  His mood is changing once again. “It’s cold in here,” I remind him knowing the ride is taking him up.  “Do you want to go where it’s warmer?”  He ponders my question, and then makes an excuse about why he can’t abandon his post or adjourn his imagined meeting.  I leave and try again minutes later – hoping he has forgotten my earlier attempt to get him into bed.

“Okay,” he finally agrees, his eyes groggy, and he follows me into the bedroom.  The covers turned back, he sits on the edge of the bed.   “You can put your feet up,” I suggest.  “With my shoes on?” he asks.  “Whatever you want,” I reply.  He still likes to make his own decisions, and then kicks off the moccasins, pulling his feet up onto the bed.

I place one of the blankets over him in much the same way I covered his children all those many years ago. “There,” I ask, “doesn’t that feel gooood?  Sooo nice and warm!  He is smiling, his eyes inviting.  “Do I get a kiss?” he asks.  “Of course,” I answer leaning over kissing him softly, gently; one more time as he whispers, “Goodnight.  I love you,”   “I love you too,” I reply, turning out the light.

The switch also closes the lights on the day’s roller coaster.  We’ve traveled through the gamut, which included Ken spitting in my face during the morning clean-up time with Ben, gouging my arm even though his fingernails are closely clipped, to the lovingness of a goodnight kiss.  Today is done, and I sigh with relief.  Some days the ride is more stressful than others, but no matter, we are forced to continue.  I hate the Alzheimer’s roller coaster more than all of the other electronic ones combined.

A few years ago, when his illness was milder, my sister asked, “How can you stand this day after day?”   I answered, “You just learn to live in the moment.  Don’t lament about losing the good times, or even begrudge the bad.  What we know for sure is that no matter where we are in any moment of our life it will change,” reminding her of our youthful pleasures and how happy those days could be, but they didn’t last and when they were gone we felt so wretched.  “Remember what Mama used to say to us during those down times — when we believed that life was the pits – she would remind us, ‘And this too shall pass away.’”

We all know that we can beat our chests and cry into the wilderness about how unfair life is, but it doesn’t change anything.  We can ask, “Why me?”  But there is no answer to that question.  We can be miserable and sad — or accepting – and in the accepting we can enjoy the small fragments of happiness which still come into our lives. Using the prayer of serenity you change those things you can, accept those things you cannot, and ask that God grant you the wisdom to know the difference.

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 In some of my previous posts I’ve mentioned having to search for things — mail, keys, TV remotes and any number of objects Ken acquires and hides.  Taking and hiding is typical behavior of victims of Alzheimer’s; part of the paranoia I suppose,  and my searching continues.  I’ve noticed as his disease worsens he becomes less aware of others around him.  He doesn’t notice me standing to one side as he hides a stack of magazines under a toss pillow on the sofa   Nor is he as clever in choosing his hiding places as he once was.  Ken now has more of an “out of sight, out of mind” attitude as he tucks things away.  My detective work is much easier than it was when letters and bills were hidden in books and then placed back on a shelf.

I suppose we could say living with an Alzheimer’s patient brings out the sleuth in many caregivers, and more often than not it is a necessity.  Of course, having been a parent has been uppermost in learning subtle detective work of a different kind when rearing a family, especially when dealing with evasive teens.

However, my parental investigations, or searching for hidden objects in my own home have been overshadowed, and are nothing compared to the gumshoe work done by  granddaughter Kristina and her boyfriend Chris these past few days.

Lately, the fates have not been kind to her.  Her mother, living far away in Utah, can only console her by reminding the young woman that bad things come in threes, and if that’s true, her quota has been filled.  First of all she had a fender bender which put her car out of commission.  Second, she lost her job, and three nights ago someone broke into Chris’s pickup and stole Kris’s purse — and his brother’s backpack.  Every important paper or card she owned was in the purse, including her keys.

Alerted, I thought of having the locks changed as our address is on many of Kris’s papers, but a quick phone call from her the following day informed me that someone had found her purse with her keys still inside.

The theft had taken place a few blocks from Jack London Square in Oakland where the police took the report.  Sorrowfully, the officers concluded the crime was considered a petty theft and they had no manpower to do any follow up.  A homeless man found the purse in San Francisco and called Kris on her cell.  The three (Kris, Chris and the homeless man) agreed to meet near a donut shop off Market Street.  Rewarding him generously, Kris shuffled through the remaining contents finding several important documents missing, including her driver’s license and ATM card. 

Reporting the ATM card as stolen, the bank read them a list where there had been attempted use and refusals.  Determined to find the culprit, the two were allowed to view  tapes from the businesses where use attempts had been made, which included places in Oakland, San Francisco and Vallejo. Their conclusion:  the thief lives in Vallejo. 

“Everyone was so helpful,” said Kris, “but the tapes we have viewed so far were not clear enough for identification, nor could we make out the license number from his stop at a gas station.”  And the search continues.

Their goal is to catch him on tape swiping the card, and hopefully a good tape will show the license plate of the car.  The police have said if Kris and Chris can find that kind of conclusive evidence the accused party will be arrested.

I admire the young sleuths their tenacity and great detective work, and the fact they are still “hot on the trail.”  If there is a positive epilogue I will surely report it here.

Searching every shelf in my home, hunting through all of the drawers, and shaking books to find what Ken has secreted away doesn’t begin to compare to their diligent hard work, but despite her loss this has been an “entertaining” saga for me to share.  It tells me, once again, that life goes on even in the homes of Alzheimer’s patients and their caregivers.  And while having a young life temporarily turned topsy-turvy with some of fate’s mishaps their adventure, while frustrating for them, makes me feel “normal,” as if I’m still involved in and part of the world out there.

My New Year’s wish for Kris is that she gets her car fixed, finds a great job, and all of her important papers, somehow, show up.  In addition, I wish for them a champion’s feather in their caps for effort – and in the end justice.  I hope they catch the bad guy.

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I met Dotty last week.  Dorothy is the mother of Bob DeMarco, writer and editor of The Alzheimer’s Reading Room, and his topics appear to be endless.  To cover all the bases he is a prolific writer, sometimes invites guest bloggers to contribute, quotes from many sources, and all in all probably supplies the best variety (including professional articles from medical people) of AD information on the internet.  Bob has written 1,810 articles while caring for his 94-year-old mother who has been a victim of AD for approximately seven years.  Bob is devoted to her.  He is also striving to be the best caregiver possible.

Dotty met her admirers through a short video Bob made for the Reading Room.  I was impressed.  Ken having been diagnosed with Alzheimer’s about the same year as Dotty, I expected them to be comparatively close in their journey.  I do have to admit that Dotty is ten years older than Ken which makes a tremendous difference in their physical condition.  While Dotty appears to get around with “hurtful knees,” Ken still has good upper body strength, but does have a little trouble keeping his balance and when he walks there is some shuffling.

What did impress me with Dotty was her ability to carry on a comparatively good conversation with Bob.  In the video Bob spoke of ice cream.  She knew about ice cream, appeared to remember ice cream, and when it was offered expressed excitement in getting some.

Ice cream is Ken’s favorite dessert.  My freezer is never without it.  Before his illness I could count on him going to the garage and bringing in a container.  He wasn’t content to get a bowl and serve himself a helping; rather he would sit down and eat from the carton.  Even though it was just the two of us, I felt annoyed at this somewhat inconsiderate practice.  “Don’t worry,” he would counsel, “in a few days I will have eaten the whole thing leaving no germs for anyone else.”  Then he would laugh knowing I didn’t approve, nor did I have a snappy comeback except maybe, “Oink, oink.”

When I serve him ice cream now, I have to tell him it’s ice cream.  He takes a bite and says, “This is good.”  However, he never says, “I would like some more ice cream,” or “May I have some ice cream.”  He no longer remembers the name of his favorite dessert or that he even had one.

I also listened to a recording of “Dotty in the morning.”  She is conversational; touching on the weather, the day, her knees hurting, and even sends a verbal jib to Bob in a form resembling sarcasm.  She was also a little cranky, which is permissible at 94.

I suppose what I am doing here is making a comparison.  Even though there is that age thing, both Dotty and Ken have had AD for approximately seven years.  I also suppose it’s a natural thing to do when there is a similarity in a problem; in this case an illness.  I once asked my good friend Madalyn a few “when” questions.  Kindly, she said, “Everyone is different.”  Even though I am convinced of that I found it interesting to do a little comparing with Dotty and Ken, concluding that Ken’s disease has ravaged his brain much more than AD has ravaged Dotty’s.

Within our immediate families we have Ken’s mom and dad, his sister, my mom and Ken, that’s five.  Outside of our immediate family, and still counting, we have close friends and cousins who have been stricken with AD and the list is growing.

Still my search for answers continues.  With each dear person I tend to make comparisons – as I have done with Dotty – and as I compare I am filled with more questions.  Uppermost being (which has no answer), what is it that allows the disease to ravage some victims very quickly, and others more slowly?  The following are other questions always on my mind:

1,  Is there recognition?  Their children?  Spouse?  Brothers and Sisters?  Friends?

2.  Can they still carry on a conversation?  How far into AD did they lose that ability to communicate in what might be considered a normal conversation?

3.  Are they combative?  If so when in their AD did it begin?

4.  Are men more combative than women, or is it an individual thing?

5.  Can they still feed themselves?

6.  Can they attend to their private needs?  If not when was the change noticed?

7.  How long does AD last?  (I know that answer from the people at Alzheimer’s Research.)  Victims can live with AD for 20 years or more.

8.  After watching and listening to Dotty I could ask, “Why is Dotty able to communicate better than Ken even though their time frame is similar?”

Another case in point is Loretta, Ken’s older sister.  They are very much alike in their digression, although she was stricken a few years before Ken.  Their decline has had a separation of about three years which is their age difference, making it all the more interesting.  I have often said that because this sister and brother are so much alike they could have been twins – identical twins – which is impossible.  Still, I have always called them two peas in a pod.  So much alike during their lifetimes, and also is their AD journey.

Both of their symptoms resemble those of their father, Nick, rather than the symptoms we noticed about their mother.  During his AD illness, Ken’s father was stubborn, angry and I believe could have been combative, but we don’t know.  His mother was meek, submissive and depressed during her husband’s illness.  In private care, with her own AD she continued being meek, submissive and depressed, but she was also grateful, friendly and kind.

My own mother regressed back to a little girl.  I watched her lose memory of my sisters and me (she knew I was someone, but didn’t know who).  At one point she though of herself as a young adult wanting to meet people her own age so she could get married and raise a family.  She even asked my father if he could introduce her to other young people in the community.  Continuing to regress, she became a little girl who believed I was her mother saying one day, after spending hours with me in the car, “I was with my mother all afternoon.”

People have said to me that Alzheimer’s is an interesting and fascinating disease.  Then they apologize because of their supposed lack of sensitivity.  “Don’t apologize,” I answer, “I thoroughly agree.”  Although I am completely immersed in the caregiving aspect of the disease, and feel downhearted at times, I also find AD fascinating.  I suppose that’s why I am so curious and plagued for answers.  I will continue to search and compare Ken with other AD victims in my own quiet way.  Perhaps it will help me gain more understanding about my assignment as a caregiver.  Like Bob, I would like to be the best I can be.  I do know that reading of others who share in this journey helps me to cope.

Meanwhile, I hope to become a more compassionate, caring and empathetic person — and caregiver.  Nevertheless, as I search for answers I must remember the sage words from Madalyn and accept the fact that “everyone is different,” including Ken and Dotty.

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Granddaughter Liz, following her yachting experience as a crew member, is taking time to really see the world by living abroad for a while.  An exciting time for her.  Presently, she resides in Montenegro in a small apartment all her own.  She keeps in touch with family and friends through the internet, especially Facebook.  Liz is also a budding writer.

Recently she posted a question asking, “What’s it like to be in love.”  Talk about opening Pandora’s Box – but instead of problems pouring forth to trouble mankind butterflies of vibrantly colored messages soon filled an almost endless column of wonderful responses – and wise – all about love.   Amazing how pushing a certain “button” in people can open the floodgates of thought.  Facebookers not only wrote about what it’s like to be in love, they mentioned the many facets of love, the different kinds of love, degrees of love, receiving and giving love, the highs and lows of love, the ecstasy and agony – with one referring to love as positive rage – and they even touched on the ultimate:  God’s love.

Possibly believing that their friend had met some wonderfully handsome, dark-eyed and brooding foreigner her friends might have been giving her their very best advice, as were her mother and I. Yet, we stood our distance – no personal questions.  Near the end of everyone’s comments Liz interjected, “This, by the way, is for a book I’m working on.  Thanks everyone for your posts.”

Grateful that my granddaughter, on the other side of the world, is still thinking clearly I went about the day’s business.

The long list of “Honey do” chores which I now do or assign to a handyman still plagues my daily life.  Home and rental maintenance is a constant.   Today, I decided to sand some drawers which had been waiting for the final touches for years. With the weather mild I chose to work in the backyard.  The drawers were one of those things my procrastinating husband had put off without realizing how precious little time he had left to be my “Honey Doer.”  Alzheimer’s does that.  It would seem that even I didn’t fully grasp how the disease quickly robs the victims of just about everything they knew and understood: relationships, years of acquired knowledge, skills, talents and even love.  That’s the hard one for me to accept:  love.

Does he love me?  And at times I wonder if I love him even though I am duty bound?  I know I am devoted to the man.  On the other hand there are times when I am afraid of him.  His strength is still amazing and when he is angry I try to stay out of what could be harm’s way as he can become combative.  Nevertheless, I truly care about him and I’m constantly concerned about his health and well being. Fearful that he might fall and seriously hurt himself, Ben, David or I watch his every move. Each night before I go to bed I check him, as I did our children, making sure he is safely in bed, covered, seeing that all is well before I retire.  The thought of placing Ken in a full-care facility rips my heart out, and if he passes on before I leave Planet Earth I know my loneliness will be beyond measure. Does all of this add up to love?

Working on my project my back was to the house.  Ken was inside with Ben content to sit and rest as he does most of the time.  However, this afternoon he must have noticed me doing something out of doors.  Did he know it was me or did he presume I was an intruder on his property?  I was unaware of even the door opening.  Suddenly I heard, “Boo.”  My first though was that we had unexpected company yet I recognized the voice as that of my husband.   “Boo?”   Turning, I saw that it was Ken and he was smiling.  His eyes were bright as he continued to recognize me.   Apparently, he had known that I was the one working outside, and came out to surprise me with a gentle “Boo” to get my attention.

It was as if years had been swept away.  I said, “Hi Honey,” the same way I would have greeted him long ago when he came home from work and found me immersed in a project.  He leaned over and I gave him a welcoming kiss as I had always done in the past.  I almost expected my husband to ask, “What’s for dinner?”  He didn’t, but he did continue to talk about his day — as if he really had one.  However, he made no sense, but it was the way he continued to talk – as if the scene was taken from yesteryear.  During those moments my heart jumped, and I was filled with love for the man I had married: my husband who was standing with me as the sun began to dip.  What I felt wasn’t the love/devotion of a care-giving spouse, but the love of a long-married wife — love — like a comfortable pair of old, favorite shoes — soft and warm.  The moments didn’t last long before Ken complained of being cold, and we all went back into the house where he sat down — soon drifting back into the fog.

Fragments of time such as this still make me wonder about the disease, and I’m sure I sound like a broken record as the thought surfaces over and over again in my mind.  Is memory destroyed because of the plaque, or is it so buried under all of that gook it can’t come forth except at certain times when the fog seems to momentarily lift?  If it is destroyed then why does he, at times, get these sudden bursts of remembering?  I have no answers, but whatever it is that allows me a glimpse of who Ken was, who we were as a couple is a gift, and I am reminded that, yes indeed, I do love this man.

Samuel Butler, a writer of long ago once wrote, “To live is to remember and to remember is to live.”  Today I am alive and I remembered love — so did Ken — if only for  a moment.

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Carved pumpkin

Pumpkin carving, a Halloween tradition.

When my kids were at home it was their job to carve the scary faces on the pumpkins.  I also had them scoop out the “flesh” of fall’s bright orange squash so I could make pumpkin pies.

Now I cheat.  A couple of ceramic pumpkins already wearing carved faces and placed on a plate with a candle inside does the trick.  What’s more they look every bit as Halloweenish as did the real thing.  Well, maybe not quite so much.  As my in-house experts advanced in years their talents increased exceedingly.    Using the most humble of kitchen knives and scoops with utmost proficiency the more ghostly the carved pumpkins became as the artists scraped out more and more of the pumpkin flesh making the shell creepily translucent.  While I do miss the activity and the main fresh ingredient for pies I get along very nicely using the old standard:  Libby’s pumpkin in a can.

Meanwhile, I find I enjoy this holiday more now than when the house was filled with our children.  There was always so much hubbub in getting costumes ready – not only for the big night – but for school and other celebrations:  costumes on – costumes off, this party that party, costumes on – costumes off.  Then it seemed, in the past, that day-light-savings time never cooperated, switching back to standard time the week before Halloween making it really dark at dinnertime (even when eating was bumped up to 5:00 p.m.).  Chaos reigned trying to feed kids a bit of real food before they hit the neighborhood for candy while we ran back and forth answering the constant demand of the bell as early trick and treaters opened their pillow cases for the required ransom.

Kristina, the granddaughter who lives with us, loves Halloween.  At 22 her sites are no longer on dressing up for treats.  It’s been fun for me watching her get ready for this bedecked and bejeweled holiday.  She found a saloon girl dress at a vintage shop in Santa Curz and spent the last few weeks acquiring the accessories to make her costume complete.  Her young man, also Chris, found chaps transforming him into the needed cowboy to escort his “Lady in red” to various parties.  A really fun holiday and I didn’t have to do anything but watch, although I did help her with a minor alteration.  And I am totally prepared with a cauldron full of candy for the night visitors.

Living with Alzheimer’s I am determined that life will be as normal as possible, so I continue our celebration of All Saints Eve.  Decorating is simple, but effective.  I like the orange candy lights which I scatter over one specific juniper bush.  Towering above, is a ghost made from two sheets ruffled over a couple of pieces of wood stuck behind the lights in the same bush, and for the head a very large,  round light globe salvaged when an outdoor fixture was replaced.  Easy up, easy down.

For a few years, even with his disease, Ken helped, but often took down the decorations each morning not remembering the holiday was yet to come, so together we would put everything back in its place. This year there isn’t much notice from my husband.  It’s almost as if he looks, but doesn’t see.  A tall ghost surrounded with small orange lights means nothing to him as he gazes out of the front window, but I continue with tradition not only for me but for our numerous great grandchildren and Jessica, our youngest granddaughter who is 11 and blends right in with her cousins of another generation.

This morning as Ben and I were getting Ken ready for the day he looked at me with disdain as I held his restrained hands while Ben did the cleaning.  “You don’t know anything,” he growled giving me a “duh” expression.  His contorted face made me laugh out loud.  Ben looked over and laughed as well.  Ken continued making faces finally sticking out his tongue like a naughty five-year-old boy.  “Why are you making those funny and scary faces?” I asked, still laughing.  Ben looked again and said, “Faces he probably made as a young boy.”  Stopping my giggles I asked my husband, “Are you getting ready for Halloween?”

On Halloween night, later in the evening, Jess will pay us a visit with her mom and dad.  She will be wearing a surprise costume which her mother made especially for her.  Perhaps Ken will show her his little-boy faces even sticking out his tongue, and then add a few scary ones – or not.  More than likely he will be unresponsive.  However, in a pretend perfect world he would be just Grandpa looking at her with love in his eyes – remembering who she is, who she was and anticipating, with all of us, who she will become – saying something like, “You are a beautiful fairy princess, Jess (or an awesome Darth Vader — whatever the costume) and  I love you.”

So this Halloween when unseen visitors from the past make their presence known, when witches fly through the air on  broomsticks, or  ghosts and goblins dash about the streets disappearing over the hills and unexplained apparitions appear from no where, perhaps the real Ken will be allowed to sneak away from the prison of Alzheimer’s and be just plain Grandpa – for a time.  Stranger things have happened.

We can only wish.   Maybe someday we can catch that very first magical evening star to wish upon.  If it’s the right one, wishes are  supposed to come true.

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 Several years ago, when the husband of my friend, Madalyn, was well into severe Alzheimer’s and Ken’s disease just beginning, the two of us went to several support group meetings.   The speaker one evening was a health-care professional; the title of her presentation was dementia.  How often both Madalyn and I had heard the word interspersed with Alzheimer’s, making us wonder if our husbands had Alzheimer’s or were they demented, having dementia.  Were the guidelines established enough that we could tell one disease from another?

“Dementia,” the speaker explained, “is the umbrella, and under that umbrella the medical community is placing what they believe to be related diseases, even though some people are diagnosed as having dementia.”  She went on to explain dementia as a group of symptoms caused by changes in brain function, or a decline in cognition.  Though defined, it still left us a bit baffled.  However, with so little known about the actual workings of a diseased brain and other neurological disorders, dementia as an umbrella seemed to make sense, especially when the speaker placed Alzheimer’s, Parkinson’s, Lou Gehrig’s disease (ALS) and MS (multiple sclerosis) under the umbrella.  No doubt she included other diseases lesser known to Madalyn and me totalling more than 75 in all, but the link placing them under one umbrella made good sense.  Whether the dementia symptoms may later change and develop into any of the encompassed diseases wasn’t a part of her topic, nor am I a medical person who could make such a determination, but it would seem reasonable to presume that the answer could be “yes.”

Over these past six years, as I have journeyed with Ken into the fog of Alzheimer’s it seems as if the cases under the umbrella are becoming almost epidemic.  I often hear people say, “It’s because everyone is living longer.”  That observation conjures up another burning question.  Is it inevitable that living longer will bring the majority of four score and younger people into the hopelessness of brain disease?

When Ken and I first married we were best friends with three other couples.  We were not a group, but they were best friends, nonetheless, with us, and we have kept in touch with all of them through the years.  Today, two of the women and two of the men are under the umbrella diagnosed with short-term memory loss, two with Alzheimer’s and one with dementia.  All of the disorders began somewhere in their mid to late 70s.  Yet, with our large circle of friends and acquaintances I have also observed early-onset of Alzheimer’s and Parkinson’s, and one death from ALS.

The mother of Barbara, my friend with short-term memory loss, was sent off to a state mental hospital in her mid 50s with what they diagnosed as brain deterioration.  Was it actually early-onset Alzheimer’s?  Earl, who has dementia, is the son of man who suffered most of his life with severe Parkinson’s.  Our  daughter, Debbie, had a favorite beau during their teen years who tumbled dramatically into full-blown Parkinson’s in his early 30s, as did celebrity Michael J. Fox.

With the power of his celebrity Fox brought world-attention, and hopefully more research, to his disease.  Of course, the 40th president of the United States, Ronald Reagan, brought the same extraordinary attention to Alzheimer’s during his 10-year battle with the disease, as did movie great Charlton Heston.  People no longer talk about a second childhood, senility, brain deterioration or sun-downer’s disease.  These umbrella diseases — with people of all ages becoming victims — are no longer swept under the carpet to be ignored as just some old folks’ ailment.

If there is a question here it would be:  Will there be a breakthrough in finding a cure, or at least management for these dreadful diseases?  If so, when? And, if a reliable treatment for AIDS was found in a relatively short period of time, what’s holding up research for The Dementia Umbrella?   According to a recent paper from Johns Hopkins the future looks alarming for 1 out of 2 people who will get Alzheimer’s if they live long enough.  That’s 50 percent.  Research and solutions are musts for the coming generations.

Presently, there are no real answers, but there are some quiet observations.  In watching my friends and reading about Fox, Reagan, Heston and others, their spouses are incredible as they walk with, sit by, and worry about those they love.  Collectively, they have all remained devoted which is not only inspirational, but encouraging to all of us caregivers traveling that same unfamiliar path.  The battle which goes on under The Dementia Umbrella can bring out the worst in people or it can bring out the best.  I don’t know everyone struggling under this covering, but those I see, read about and know are phenomenal human beings. Kudos to these caregivers everywhere.

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My mother was the most charitable person I have ever known.  From the time I was a little girl I remember strangers standing at our front door while she made a sandwich as he waited, or fed another lunch in exchange for washing our 3rd-floor windows both inside and out.  There was never a thought these people were anything other than what they claimed – down, out and hungry — as she allowed them to work for food during those Great Depression years. 

It wasn’t as though we were much better off with my dad doing piece work for a small steel company.  When the order was filled he went home with his few dollars to buy food, pay the rent, and hopefully the utilities.  Yet my mother managed to stretch the meager dollars to care for us and to help the less fortunate.  She and my dad prided themselves on never going on “Relief,” which was the welfare program of the 1930s.  They were fiercely independent, and, perhaps, to a fault proud, but that’s who they were.  They could take care of themselves and they did.

During World War II and the peaceful, economic healthy years which followed, I watched my mother continue her service to mankind through our church and other philanthropic organizations.  Nor did she choose to treat herself to some delicacy at the soda fountain or bake shop.  Rather than be frivolous she would take the money saved and donate the coins to a worthy cause.  Mama always felt fortunate and blessed to be self-sustaining.  This pattern continued for both my parents all of their lives.

One day, late in life, Mama was taking a bundle of newspapers to the garage for recycling.  Stepping down the one step of their entryway, she lost her balance and fell.  Bruised and bleeding she picked herself up from the cement, grateful no bones were broken.  Stalwart that she was, my mother insisted ice packs and a little rest were all she needed.

The next day, John, a representative from our church stopped by their home for his regular monthly visit. Finding her battered and bruised he asked what had happened.  Hearing Mama tell of her fall, he immediately said, “Irene, you need a hand rail at your front door.”

Sounds of a hammer and saw awakened my parents the very next morning.   Investigating they found John building the needed hand rail.  “I can do that,” protested my father.  “Now you won’t have to,” answered John, continuing his project.  “Then let me pay you for the materials,” Dad insisted.  “You can’t afford me,” replied John.   Humbly my parents accepted their gift.

Later my mother told me that she was surprised at her feelings of submission – of allowing someone to fill a need for them.  Being the giver all of her life she didn’t quite understand feeling so good about receiving.  Then she thought of the triangle of doing God’s work.  “Without people in need, and we were in need,” she explained, “other people might never have the opportunity to serve, to experience being charitable. With God as the director, I became part of the triangle.  Instead of feeling embarrassed about accepting John’s charitable offering I felt humble and grateful, and very warm inside.  I guess part of my learning was to be a grateful receiver.”

My mother’s last years took her into the depths of Alzheimer’s.  Slowly she faded from the vibrant woman she was into a child I could only imagine I might have known.  A little temperamental and stubborn at times, caring for her was still relatively easy.  Her walk with the demon of diseases took a little more than four years before she passed on peacefully in her sleep. 

In another dimension my mother is probably musing about the last chapters in her book of life as she continues to grow in her appreciation of being a grateful receiver.  Knowing my mother, however,  she’s also back doing God’s work: charity, which is the pure love of Christ. 

Care giving for a loved one who suffers from Alzheimer’s is of that same charity, but is so often a thankless job.  The thought of being part of God’s triangle somehow escapes as the tedious days and endless months and years continue with no relief in sight.  And gratitude for this horrible disease?  There is none.  Yet, during this time of my accident recovery I have found endless gratitude, especially in finding such capable employees.  Both of Ken’s caregivers, Ben and David, have my utmost appreciation.  At the end of their day, I would imagine they feel downtrodden and exhausted, but they continue caring for Ken with love and kindness.  And while Ken is the recipient of their goodness, I am the one filled with gratitude, making me the grateful receiver.

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A few months ago while still healing from major injuries, I browsed through a stack of magazines, mostly untouched. However, as I shuffled through the pile, I noticed my church magazine, the pages already dog-eared, was opened to an article intended to be the next read. Interesting, I thought picking it up and noting the eye-catching title, “GRATITUDE,” then asking, “Was this a message for me?” Certainly, I felt gratitude. After all I was alive and recovering, and yet I was nudged at times with, “Poor me.  Angry me.  Why me?”  Perhaps I needed to ponder about gratitude a bit more deeply.

Written by a practicing psychologist who had researched the use of gratitude interventions in promoting well-being, he found that by interceding at appropriate times during counseling, thoughts of gratitude were helpful in treating depression and other problems. The doctor also advised that acknowledging thankfulness would be helpful to everyone’s mental health no matter how grave their situation. As a result of being grateful, we could all lead richer, fuller lives.

He also defined gratitude: a positive experience when we recognize gifts or blessings and feel thankful.  It sounded so overly simplistic, yet I continued reading.  Soon I began to reflect on this later portion of my life concentrating on the positive rather than the negative.

In my own defense I counceled me that I have always been prayerful.  As a child, my teachers of faith described prayer as like a sandwich:  a top and bottom piece of bread, or better known in addressing Diety as a beginning and an ending.  Inside of the prayer sandwich we were to express our thankfulness first.   “Before we ask our Heavenly Father for anything,” he explained, “we must always remember to thank Him for what He has given us.”  That could be the peanut butter portion of the sandwich.  The teacher followed giving thanks with permission to ask — the jam or jelly.   As an adult I have wondered if this pattern for prayer was a bit irreverent, but it is such a good pattern, one which I have followed all of my life, and long ago I put aside any thoughts of peanut butter and jelly when making supplication.  Perhaps now, I needed to be more outreaching in my gratitude. 

I recalled from the past that Oprah devoted the better part of a year’s programming to gratitude and journal writing. At the time, I too was caught up in the thought process of making myself more aware of blessings, but never kept a specific journal. Recently, in her magazine, Oprah admitted that through the years she had become so consumed with work there was no time left to write about the good happenings of each day. Reading from an old journal she recognized those great years from before, and commented on how happy she had been.

 The author of the “GRATITUDE” article encourages keeping a Gratitude Journal as well, with the purpose of recording several remembrances each week, but not just in list form. He suggested describing the experience, recording thoughts and emotions for the purpose of savoring and reliving what you had experienced.

In reviewing the past six years of struggling with Alzheimer’s, battling the war which is never won, I remember my friend, Madalyn, who had also battled the same war, until her husband, Darwin, died three years ago. “It wasn’t all bad,” she would tell me, and we often laughed about some of the funny things Alzheimer’s victims do and say. She reminisced about trips they had taken, visits with family which brought joy to her and momentary pleasantries to him. Her happier times with Darwin were similar to mine with Ken. These were all positive experiences: gifts and blessings recognized and thankfulness felt: gratitude.

When I came to the paragraph titled “Express Prayers of Gratitude,” I decided that would be my new beginning. As I continued my recovery in the quietness of my daughter’s home I reflected on being grateful for little things:   One at a time I could lift each foot, place it on the opposite knee and tie my own shoes, I could shower alone and I was beginning to feel confident once more. I wasn’t searching for big, dramatic epiphanies.   Deliberately, I looked for small things to appreciate because there are so many, and small blessings are often overlooked.  Every morning before I struggled out of bed I would look up at the ceiling — still wearing my neck brace and unable to kneel in formal address to Diety — close my eyes and offer a prayer of gratitude without pleading for any favors. (The favors could be requested in later prayers.) My morning prayers would be only of gratitude. I was amazed by the multitude of gifts taken for granted  for which I had to be grateful.

I have been home now for more than two months and my gratitude list grows each day. Ken’s Alzheimer’s is getting worse, but because of his caregiver, Ben, I have a sense of freedom. If I write for a few hours during the day, I know Ken is all right. Ben is with him, and I can nap undisturbed because Ben is here. I am grateful for Ben and for his relief, David. I am grateful for each new day, and my growing ability to actually help Ben with Ken. I am eternally grateful for family and friends. I won’t say I’m grateful for Ken’s illness, because I am not.  I detest this dehumanizing disease and how it has robbed us of so many good years. However, I am grateful for my coping mechanism, my compassion and awareness of others who suffer from Alzheimer’s and other devastating illnesses. I am grateful that through my writing I may help someone else; letting them know they are not alone in their struggle. I am grateful for Ken and the wonderful years we have spent together. Every so often, I see a spark in his eye and a smile. For a moment he is the man I married. Feeling gratitude and offering thanks each morning for all of this and more gives me strength.  Each day I can and will go forward into our daily battle, beginning with a prayer of gratitude.

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Remember watching the PBS special series which took place during the 1800s where the rich European noblemen and their wives had dozens of servants scattered throughout the castle: butlers, upstairs and downstairs maids, a seamstress or two, cooks and bakers plus scads of additional kitchen help.  Outside there were gardeners, stable boys, coachmen and countless others to keep the grounds manicured and trimmed, and the carriages polished.  It took a lot of people to keep those palaces functioning and presentable. To head up the staff was the prim and proper housekeeper who, with help from the butler, supervised the staff making sure their work was always done; accomplished quickly, quietly and out of sight from the manor’s lord and lady; except possibly, for his groom, her personal maids and the children’s nanny.  The “upper crust” did not fraternize with the help. 

Even in America the mansions of the early 19th century boasted servants quarters in their elegant three and four story mansions where it was normal for the help to “live in.”   Economics, career opportunities and life styles have changed the previous opulent society from normal to unusual.  However, it isn’t unusual for busy people in all walks of life to enlist cleaning services and gardeners on a weekly schedule, or occasionally to help catch up on the often dreary tasks of home maintenance, but for the most part, most people do everything themselves

Ken and I were always do-it-yourselfers, learning early on that by doing you got more bang from your buck, plus the satisfaction of a job well done.  Whether it was adding an extra room, painting the house – inside and out — bricking in a patio, building fences, landscaping the front yard, caring for the children or keeping the house clean we did it ourselves.  Consequently, I found coming home after my three months of recovery and recuperation a bit disconcerting to have “help” in my house on a permanent basis.   What’s more, it made me wonder who’s the boss?

I knew, without a doubt, that my family had made the very best of decisions in my absence, yet to find Ben (Ken’s caregiver and a person I didn’t know) busy in my kitchen preparing food for my husband  — and me — felt very odd.  Not only does Ben care for Ken, he cooks, keeps up with the houseswork and laundry (which he folds to perfection) and polishes the furniture when company is coming.   However, I still wasn’t sure if I was at ease with this new arrangement, feeling at first as if I didn’t quiet fit anywhere in my own home.  But doing a reality check I also knew that I would have to change; caring for Ken as I had done before the accident was a thing of the past — something I could no longer do —  especially considering all of his new needs.  Even though I was capable of taking care of myself, it was, perhaps, a good thing to still require rest and a nap when my energy level plunged, and appreciate Ben’s presence.  I was the one who still had months of therapy for my neck and knees, and I was the one who needed time to make an attitude adjustment.

Unlike the gentry of long ago who didn’t fraternize with the help, a few months have passed allowing me to become comfortable with Ben and I believe him with me.  In addition, there is David who is Ben’s relief (granddaughter Kristina, who was living with us, takes the night shift).  Having other adults in the house has been a surprise bonus – someone else to talk with.  I have also met and admire the wives of both men, finding the four new treasures in my life.  They are all career caregivers – a noble calling – kind and gentle, but firm when need be with the childlike adults whom they assist.

An auto accident wasn’t a path I would have chosen, nor would I have pressed the “select” button for a six-year continuing assignment with Alzheimer’s, but I have learned to accept those things I cannot change.  Life has taken me to this point where help is required and it is with gratitude and growing affection that I give thanks for Ben and David.  Their hard work and devotion continually touches my heart.  But even more, I am grateful that I am not stayed by some silly tradition from generations past.  I can, and do, enjoy and appreciate their friendship.

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